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Emotional support for PD student

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Emotional support for PD student

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Posts: 1
Topic starter
(@trishpoole)
New Member
Joined: 8 years ago
[#843]

Can anyone advise about providing support to parents of a child (of mainstream ability but attending a PD school setting) who is beginning to ask questions about his disability - specifically  why he cannot walk and will he ever be able to walk. This child is 6 years old and has begun to use a power chair. He has mytonic muscular dystrophy which may or may not be degenerative.

His mum has asked me what she should tell him. I have lots of SEN experience but not with children with his level of understanding to ask these questions and to be able to contemplate his own future.

Can anyone give advice or point me in the direction of any resources that the parents might be able to access or that we could use in school.

Thank you


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Posts: 11
(@alex-a)
Active Member
Joined: 6 years ago

I think, depending on the relationship this child has with their PD specialist teacher that this might be one point of start.

Also if your school has a youth counsellor that is another potential avenue to explore.

Also, looking at the different books that portray different abilities - for example Ade Adepitan (Paralympian and TV presenter)  and perhaps write him a letter like a pen pall might help.

Hope this helps


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Posts: 5
(@crosetesco-net)
Active Member
Joined: 8 years ago

Also as a general comment, I think psychological support for children who are coming to terms with a life long disability should be a fundamental part of the team around a child, alongside the usual practitioners like for example physio, ot, SLT. In our experience, in neurodisability, this does not happen as a matter of course.


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Posts: 5
(@crosetesco-net)
Active Member
Joined: 8 years ago

Hello. I'm a parent of a daughter with cerebral palsy in mainstream who is now 14 (year 10, doing gcses). She is a powered wheelchair user who is hoisted for all transfers, has never walked, and relies on us, her parents, or carers for all her care needs. We have had to deal with similar questions also from a young age. I am happy to chat directly to you about what we have done and said over the years and also what external help we have got for her from camhs or school wellbeing. Best wishes


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Posts: 3
 Liza
(@liza)
Active Member
Joined: 7 years ago

Involvement in a local/regional group for those with MD or a Whizz -Kidz Club help provide a yp with a  peer group that "gets it" , a place they feel they belong so would encourage Mum to explore what they have to offer.

Also sharing books where characters have impairments/ racial/cultural differences ,lots of lovely picture books ,some here but your local library service may also hold a list . https://www.scope.org.uk/advice-and-support/storybooks-featuring-disabled-children/#Disabled-children-in-the-picture-inclusive-storybooks

 

 


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